Alright, for over a year I have been trying to describe this visual symptom that is making my life so difficult but I have never known just how to put it into words. This symptom is my worst Multiple Sclerosis symptom and I do not see it going away anytime soon so I need to really explain what it is instead of shifting between “visual issues”, “vertigo” or whatever else I have been using. I need one term to explain what I am talking about and I am settling on “oscillopsia” since that is what my neurologist says it is and that is what everything I read seems to point to.
So now let me try to tell you what this is like for me. When you (MS patients) look straight up do you feel so dizzy that you want to fall? That intense feeling “in your head” is what I get when I move my head “too quickly” in any direction. If you do not have MS (or that weird looking up thing so many of us have) here is another example; when I move my head it feels like there is a g-force pulling at my head from every direction at once. In case you are not sure, g-force is that heavy feeling you get when on a roller coaster or anything that starts moving really fast like a jet; everything wants to move forward but you are pushed back into your seat. What you are feeling is g-force. The faster I move my head the stronger the “g-force”. If I tilt my head down (almost upside down) I get the extra intense feeling of looking straight up plus a little nausea. When I look back up I have some temporary vertigo. So that is what I have always meant by “it feels like I am spinning”, it is that heavy g-force feeling really. Pulling at me from every direction at once when I move my head too quickly which is really not that quick at all.
So that is how it FEELS but how does it look? This is the worst of it. Let’s say I am looking straight ahead and someone walks into the room; I turn my head to the left to see them but during that very small turn everything looks like a streak, as if I were spinning in a swivel chair with my eyes open or if I was on one of those rides at an amusement park that spins really fast. You can’t really focus on anything because it is all streaking by. All I did was move my head from the forward position to the left; that 6 inch turn was enough to set the world streaking by. And then it takes a moment (once my head is no longer moving) for everything to focus as it is blurry enough that I can not always tell who that person is. So trying to get around is difficult because just moving around the kitchen to make a meal feels like trying to cook on a bus rolling over down a hill. Everything is just a bunch of streaks.
Now you would think “well why don’t you just sit and not move?” but that doesn’t work. Even when I am lying down and staring at the ceiling, my head is perfectly still, but still things seem to be “unsteady”. I do not know how to explain this. It’s like the texture of the ceiling is slowly moving around, like when you are staring at a star unsure if it is moving or if your eyes are just playing a trick on you. I can’t say it’s moving left, right, up, down, in, out or swirling, it just somehow feels like it is not steady. Nothing is perfectly still.
When I am sitting at the computer it is actually not so bad but what has become obvious is that after I am on the computer for too long, I get up and everything is horrible. Maybe because my head was steady for so long and now it is moving around? Well, I tried doing a time limit thing, after every hour (for example) I would get up and move around for an hour. It felt like it kind of helped a bit but things would still be horrible; if 10 is horrible and 1 is perfect it would move me from 10 to 9. So basically, I will pay for sitting here and writing this. Even when I am not all that fatigued I have a hard time getting myself to want to sit and write because I know it means it will make everything worse for at least 24 hours. The longer I am on the computer the longer it will last. It makes no sense but this is how it is for me, that is all I can say. Oh, and even when I am perfectly still, I can still feel a minor sensation of that g-force pulling at my head from all directions, can’t forget to mention that feeling of discomfort.
Some days are better than others. Sometimes I feel like I can safely drive. I mean I have, around the block, just fine, but I mean drive in public. It’s been over a year and this has greatly taken away my feeling of independence. I loved driving, even on long empty roads through the desert! So I have my good days but then for no reason I will wake up and wow, it’s a bad day. It’s so unpredictable, I never know what the next day will bring. Plus, it’s been getting really hot, that doesn’t help. I almost have enough money to get that new A/C unit for my room so a nice little box full of cool air should greatly help with my symptoms since stress and heat are my two largest triggers. Yesterday my room was so warm, I felt dizzy, I couldn’t see straight, I was tired, and I had a sensation of static all across my skin! It was weird but wow, I really got off track. Oscillopsia.
There really is not a whole lot I can do but hope that time will fix this. I just started Gabapentin because I have read studies suggesting that it helps steady oscillopsia but I have my doubts… Gabapentin is nothing more than a sugar pill to me as it has never helped with anything but who knows, maybe this is the one symptom it will magically help me with. They also said up to 2mg of Clonazepam seemed to help. Well, doesn’t seem to do anything for me. Baclofen was also tested but they had no good results. I tried it anyways and nothing. So I may physically want to get up and do all this stuff but this oscillopsia BS is what holds me back. I mostly just want to be able to drive but I am waiting till things improve enough and stay stable. Not walking like a drunk would be nice too. So now you know why this is the bane of my existence haha. I am sure I could list so many examples of how oscillopsia affects my life (such as not being able to read my phone if I am walking or sitting in a moving car) but off the top of my head I can’t think of too much but you now know what you need to know when I say “my vision is horrible today”.